"Mama, when Phoebe dies are we going to put a stone for her?"
Cordelia asked me this as I lay in the bottom bunk with Phoebe, waiting for both of them to fall asleep.
When our beloved cat died last year, we made a mosaic stepping stone in the garden to mark her grave, which helped Cordelia process the loss.
"Are you worried about Phoebe dying because of her arthritis?" I asked. "Because it's not going to make her die. Remember, it just a disease that makes part of her body not work right, in her joints and in her eyes."
"Phoebe is going to die before me." Cordelia asserted.
"You and Phoebe are not going to die. Not for a long, long, long time. Not until you are both very old women, and you have your own babies and grandbabies." (if you want to Cordelia, no pressure)
"Like Meme?"
"Yes. Or you could even be a great-grandmother. I had a great grandmother and she lived to be over 100 years old. Phoebe is only 1 year old. She has a very long time left to live."
"Like Dada?"
"Yes, Dada is not going to die either."
I got up and gave her lots of hugs and kisses. "We are going to do everything we have to make sure Phoebe is ok. Even though she has arthritis. We are going to give her all the medicine and things the doctors tell us to do to help her feel better. Remember, before when it was so hard for Phoebe to walk? Isn't she already doing much better?"
Phoebe of course took the opportunity to sneak out of bed.
This was not the first time that Cordelia has shown concern over processing her sister having a chronic disease. After we were gone overnight for Phoebe's joint injections, Cordelia asked me if I were going to die, which I infer was her worrying about what all of Phoebe's hospital trips and doctor's appointments meant. It sucks that as scary and confusing this is for me, it must be just as scary and confusing in its own way for her. Her questions make sense and I tried to go into a kind of zen, matter of fact place to talk about them, focusing on reassuring her without being dismissive.
But of course, hearing your child asking if their baby sister will die is just heartbreaking to hear as a parent. Because I don't even want to imagine it, let alone think about her imagining it.
Like we had with the MRI, I feel like we're back in limbo, waiting for the Remicade infusion day. I'm weirdly happy/relieved that we got approved, but now I'm also just super down and anxious waiting for it. We are also going to do labs and her mtx shot while she's there, so it's basically going to be 100% awful things all day. I think the worst part for me is always waiting around for things and not being able to imagine fully what it will be like.
Yesterday, a friend who has moved from the world of early childhood education into Child Life care sent me a link to a "poem" about coming to terms with having a child with a disability (or diagnosis).
* * *
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."
* * *
It's still a loss. I'm still kind of lost. But Phoebe is happy. Phoebe loves me, I am the best thing in the world to her. That's all that matters, where ever we are.
No comments:
Post a Comment